Day 7 continued:
When we got to Primary Children’s Hospital (PCH) we unloaded and walked to the ER. They had been expecting us and after waiting a few minutes in the waiting room we were taken back for vitals and to go through yet another several rounds explaining what we had been through the past week. It was not the fastest process, but we were seen by a Pediatric ER doctor who went over her lab results and then said he was going to consult with the Pediatric Cardiologist in the ER.
Eventually he came back and said they were going to have the cardiologist come and talk with us, but that most likely we were going to be admitted to the hospital for treatment of Kawasaki’s disease. Janie is considered to have Atypical Kawasaki Disease because she doesn’t have all of the symptoms associated with Clinical Kawasaki Disease. She had enough of the symptoms to be diagnosed with Atypical Kawasaki Disease.
These are the symptoms of Kawasaki Disease:
- fever lasting 5 or more days (typically a high fever)
- joint pain (aka her trouble walking)
- rash anywhere on the body
- swollen hands and feet
- peeling fingers and toes (Janie did not have this)
- Extreme irritability
- Loss of appetite
- Conjunctivitis (red eyes)-without goop like pink eye would have
- swollen lymph nodes (She did not have this)
- Strawberry tongue (this was noticed in the hospital, not at home)
- certain indicators in blood work
After he left the reality of the situation started to set in. Up until being seen by the Pediatric Dr I was in good spirits and naively confident that they would just send us home. It was all still precautionary in my mind. But after he came in and said we would most likely be admitted both Trevor and I couldn’t help but feel emotional after he left. We reached out to some family friends who lived nearby and asked them to come to the hospital to help Trevor give Janie a Priesthood blessing of healing. They said they would be there as soon as they could.
In the meantime the cardiologist came in and spent a great deal of time going over Kawasaki Disease and what to expect during our hospital stay. I remember feeling foggy, and even asking her, “So are we going to be admitted tonight?” She nodded patiently and then said we would be admitted that night, they were just waiting for a bed to be available. She also said they would start her IVIg treatment that night, and would have a sedated echocardiogram in the morning. It was a LOT to take in, and we asked a LOT of questions.
I even remember asking, “What happens if we refuse treatment? Not that we want to do that, but I want to know what happens to kids who don’t get treated.”
She nodded and said that Janie would be at risk for a coronary aneurysm, coronary dilation, and a massive heart attack before the age of 30, but most likely when she is a young child.
Again, a lot to take in for two parents who thought it was merely precautionary. Not only were there major risks to her heart to consider, but we also were going to be briefed on possible allergic reactions to the IVIg treatment and the sedation side effects once we were admitted.
IVIg stands for Intravenous Immune Globulin, which is basically highly purified antibodies taken from donated plasma and administered in a large dose through the vein. It is the main treatment used to treat Kawasaki Disease, along with an aspirin regiment.
The Dr was gracious listening to all of our concerns, and after we had exhausted all of our questions she took her leave. Right about the same time our family friends showed up and gave Janie a beautiful blessing of healing and strength. Janie sat on my lap during the blessing and folded her arms. I sat there holding my very sick babe with tears streaming down my cheeks and felt a powerful connection to my Heavenly Father. There was no doubt in my mind that angels were accompanying us in that room. I felt immense comfort surround us in that tiny room before we were escorted to our hospital room for the next couple of days.
After the blessing a nurse came to take us to the Infant wing where nurses were waiting for us with sweet smiles on their faces. Our night nurse, Chrissy, was amazing. She was personable and Janie quickly warmed up to her. She felt like an old friend instantly, I will forever be thankful for her.
It was around 10 pm when we got all settled in our room and the IV team came in to get Janie’s IV going for the IVIg treatment. Lots of Dr’s came to talk with us around this time and each one examined my exhausted baby girl. Trevor and I were beat and eventually Trevor made up the couch bed and fell asleep. There was originally a crib in the room but they asked if we slept with Janie at home, and I said yes. They quickly switched the crib out and brought in a hospital bed so I could sleep with Janie at night. Sweet girl just needed her momma near, and honestly I wanted to be near too.
Once they got her IV done and the Dr’s disappeared for the night, Chrissy got the IVIg treatment going. She had to be in the room for the 1st half hour of the treatment to make sure it was going okay and that Janie didn’t have an allergic reaction to the IVIg. She monitored Janie’s stats closely and never left our side. Thankfully, Janie didn’t have a negative reaction to the medication and Chrissy was able to slowly increase the dosage to the full amount over the course of a couple of hours. She also was able to space out her checks on Janie after the 1st half hour. By about 2am Janie and I finally fell asleep. It wasn’t super restful because of the vital checks, but at least we were able to get some rest.
Running on about 4 hours of sleep I woke up to the nurses being switched and said goodbye to our sweet nurse Chrissy for the day. Thankfully she said she would be back that night and would ask to be put back on our case.
Our new nurse, Kylie, was kind and sweet and said we were first up for the sedated echo that morning at 8. They came and got her quickly, a little before 8, and we rolled her down to the 1st floor for the procedure.
For those that don’t know, an echocardiogram is just an ultrasound of the heart. It is like an ultrasound to check a baby in utero, only it checks the heart and the many arteries and vessels surrounding the heart. Unfortunately because of Janie’s age and how small her arteries are they need her to be able to lie extremely still, hence the sedation. It’s just too hard for a little one her age to not fight the techs and then they wouldn’t get a clear picture.
I hate sedation. I even asked if there was any way we could avoid it, to which I got a resounding no.
We went into the room and the Nurse Practitioner and another nurse introduced themselves as the ones who would be monitoring Janie’s vitals the entire time and would be there to intervene should she become unstable. It was just a light sedation, no breathing tube needed. Still, they went over what they would do if she stopped breathing, or her blood pressure dropped. Of course they have to go over the scary things, but Trevor and I sat there, with Janie on my lap, fighting back tears thinking of all the things that could go wrong.
Then two cardiologists entered and talked with us about what they would be looking for with her arteries and heart. They explained the damage Kawasaki’s can do to the heart and the arteries (same as the ER DR went over the night before). They talked about what an aneurysm was and how dangerous that can be to a child. At the same time the nurses had hooked Janie up to the sedation and were starting the 10 minute sedation block where she would slowly start to go to sleep. So we are sitting there watching our daughter fall asleep, with her body getting heavy like lead in my arms, and hearing all of these terrible things that could have happened to her arteries that supply her heart.
It was about this point that both of us just lost it. The tears flowed and flowed and couldn’t be stopped. We had sat there trying to be brave in front of the Dr’s and it got to a point where we just couldn’t. And you know what, that was okay. Our world was turned upside down in a matter of hours and taking in all of these new facts and concerns was a lot to bear.
The nurse gently lifted Janie onto the bed and we kissed her goodbye. We were escorted from the room and walked hand in hand, with tears streaming down our face, down the hall and towards the cafeteria. It was terrifying leaving our baby in that room, unsure of how she would respond to the sedation, in the care of strangers.
We pulled ourselves together and grabbed some food, which we barely touched, and went back to the hospital room for some privacy.
After what felt like hours (it was only an hour and a half) the nurse came and got us to pick up Janie. We walked down to get her and they had done an EKG and and Echo which is why it took a little longer. They had a sedation recovery nurse alongside Janie watching her vitals the whole time. They said she did great, and didn’t need any extra medication or breathing support.
It was hard to see my child looking almost lifeless. She was pale and so still. But I could see her chest rising and falling, and had quickly learned what was a good blood pressure for her age from the nurses, so I was able to sort of read the monitors.
The recovery nurse was great and stayed with Janie for about an hour until Janie started to wake up. Around the same time, about 45 minutes into recovery, her pediatric team came in. If you’re a Grey’s Anatomy fan you would appreciate knowing this is a teaching hospital and they round on patients and give an overview during rounds. The room filled with about 7 doctors, all in different levels of schooling. Most were residents, and they had their attending with them. A very competent medical student gave Janie’s history and then the team carefully examined her, which helped wake her up from her sedation even more.
The team left, and the recovery nurse checked her off as healthy and strong. She stayed awake for about 10 minutes and then fell back asleep, which is normal after sedation. We let her sleep and we just sat on the couch and counted our blessings.
About an hour or so later Trevor’s mom and sister arrived with lunch for us. His mom and my mom had been communicating and both bought plane tickets within a 1/2 hour of each other (unplanned) to come and be with us during this scary time. My mom and dad were visiting my brother and his family in South Carolina at the time, and on the night we were admitted she texted me and said she was flying out and would see me in the afternoon the next day. Trevor’s mom flew in from California to help. It was such a blessing to have both grandmas come and help, a comfort we didn’t realize we needed until they said they were coming.
Janie was so happy to see her Aunt and Grandma! She woke up from her nap in awe as she looked around the room and saw two of her favorite people there. They brought Janie a couple of stuffed animals, a book, and balloons. She was in heaven.
A few hours later my mom arrived and Janie’s eyes grew wide as she realized both of her grandmas were there.
The rest of the day was filled with vital checks, Drs rounding on us, and finally hearing back that both her echo and EKG were normal. No aneurysms had formed and her arteries had not dialed. The echo was a baseline of what her arteries and heart looked like, they said they would do another echo in 2 weeks to check to see if any damage had progressed or not. But for now, she looked good.
After all the company left, the Grandmas went back to our house to clean and get some sleep, it was just us again and the exhaustion had started to set in. Janie was doing amazing. She had played and was eating again, we could tell she was definitely feeling more like herself. Her hands and feet were less swollen and the best news was she hadn’t had a fever since the night before when we were admitted!
We got Janie settled for the night, but of course she had to be jostled during vital checks and during her medicine times. They had to put her on high dose aspirin and a stomach blocker to ensure her arteries stayed clean, and the stomach blocker to make sure her stomach was affected by the aspirin. Each time she was jostled awake she would start bawling, just so tired. At one point we knew a medicine dose was coming and so we got her up and I held her in the rocking chair while we waited for the nurses. Janie kept pointing to her IV and crying “owie!” over and over. I called for Chrissy to come in (she was back on our case that night) and she gave Janie her meds and then we decided it was best to take out the IV since it hadn’t been used since the morning. She said IV’s can easily go bad once they are not in use for a period of time.
Janie was so exhausted and so worked up that she began crying very intensely. So much that right after they pulled out the IV she threw up all over me, medicine and all. Chrissy took her and got her cleaned up, and I changed and cleaned myself up. It was around 10 pm when all of this happened. They checked with her pediatric team and they gave the go ahead to give her another dose of meds since she literally threw it up immediately after receiving the first dose. After that, they checked vitals, and we got settled into bed. Janie was asleep instantly and thankfully the nurses didn’t have to check us often that night and we actually got some solid sleep.
It was Halloween. We definitely did no envision spending Halloween in the hospital, but wow do they go all out. When we woke up the Child Life Team came by to give Janie a costume. I asked where we turned it in when we were done and they smiled and said, “You get to keep it! These are all donated to the hospital.” My jaw dropped. These were not hammy down costumes, these were brand new costumes still in their original packaging.
Janie immediately picked the Elsa costume with a beautifully hand made wig made out of yarn. She had never seen Frozen, but we spent the day watching youtube videos of Elsa and she was hooked.
It turned out that her entire Peds team was dressed as the cast of Frozen, which Janie loved. They rounded on her around 11 am and all of them commented on how good she looked. “She’s like a new kid!” they exclaimed. Her swelling had gone down and her vitals looked great. They went over our treatment plan, and coached us on how to administer the low dose aspirin to Janie for 6 weeks after discharge. Then they surprised us by saying if her temperature stayed normal we could go home at 6 pm that night! Originally they had said we would need to stay until Thursday morning, so going home a little early was a nice surprise.
Trevor took turns staying with Janie while the other used the Ronald McDonald house on the 3rd floor to shower. The amount of donations and generosity in the hospital still astounds and humbles me.
Soon after we finished both grandmas returned after spending the morning cleaning our home (they are the best!). We got Janie dressed in her costume and went to the 1st and 3rd floors of the hospital to trick or treat. I have never been so impressed! Every two feet there were at least 2 trick or treat stations lined up on either side of the hallway. There were books, clothing items, activity packets, toys, and an impressive amount of candy wherever you looked. It only took Janie a few minutes and she was a pro.
After her first trick or treating experience Janie was exhausted. We went back to our room, got her changed, and got her settled for a nap as soon as we could. Both grandmas went and got us lunch, and Trevor slipped out for a workout.
The rest of our time was spent with vital checks by our new nurse Rose (she had worked there for 28 years!) each time Rose took her temperature I held my breath, but thankfully it was always within the normal range. Janie is one tough little girl. We talked with another cardiologist who was researching Kawasaki’s in the late afternoon. She would be one of the cardiologist we would meet with during Janie’s 2 week and 6 week echo.
After Janie’s turn around it’s hard for me to imagine how sick she was that week of fever and incorrect diagnoses. We have since seen her regular pediatrician who is well versed in Kawasaki’s and was watching Janie’s case throughout our entire hospital stay.
This past week, on November 15th, we had Janie’s 2 week post diagnosis echo. It was normal! Her cardiologist is pleased with her progress and told us to continue the low dose aspirin at home and to come back in a month for her last sedated echo. If that goes well we won’t be seen again for a year.
Kawasaki’s is still not known how it is contracted. It has been studied for 50 years and they are still unable to determine what causes it. It is not contagious, but it is a body’s reaction to something. It could be that Janie is genetically predisposed to react to a virus, bacteria, weather change, or even something as odd as having your carpets cleaned with strong chemicals. If it is a genetic mutation, then children who have Kawasaki’s may have some stimulant that triggers this response in their body. However, the cause is still unknown.
Thankfully the signs are clear, and lab work can indicate that Kawasaki Disease is happening in a child. I wrote these posts to hopefully help save a child’s life from this mysterious disease. Please don’t be the parent that takes “its a virus” for an answer if your gut tells you otherwise. Keep going back in, ask for blood work, ask for the test you need to get peace of mind. Drs are INCREDIBLE, but they are also human. Parent intuition is a strong indicator, trust yourself.
Janie, we love you sweet girl. I’ve recorded this story here for you to look back on and count your blessings. I also hope to give back after all of the love and care we received from nurses, doctors, family, and friends. If I can educate other parents on this you, my dear, may just save lives.
We thank our Heavenly Father every day for you and we are so thankful you are healthy and strong again. It is so nice to see you laughing and playing with such vigor these past few weeks since you received treatment. Keep running and laughing baby girl. You are our everything.